Haven't met anyone yet whose son has this. I am curious and anxious to speak with parents of sons who have this and compare notes on how our sons are doing. Kevin is 10, still getting around but slowly. . Takes deflazacort. Back hurts at time as he has slight fracture but taking Fosamax. Also taking Metformin for insulin resistance, along with several supplements -- creatine, CoQ10, Vit. E, D, Citracal, Omega 3,6,9. Uses a GoGo Scooter at home and school for long walks. Please post if out there. Thanks a lot.
Patti Frank, NJ